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Cystic Fibrosis, donation needed..

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Old 09-10-2010, 06:47 PM   #1
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Cystic Fibrosis, donation needed..

Hello TW members,

I have a 2 month old daughter who was diagnosed with Cystic Fibrosis. It is an incurable disease and I need your help. I am doing a fund raiser for the Cystic Fibrosis Foundation of San Diego to help find a cure. On October 30, 2010 there is a event going on in Encinitas, CA. where I will be (along with hundreds, maybe thousands more) cycling for 66 miles. I know I have not been a member here for that long but any help is greatly appreciated. Thank you in advance for your help.

Donation link
http://www.cff.org/LWC/dsp_DonationP...&idUser=426469

Event link
http://www.cff.org/Chapters/sandiego...69&Event=14073

Joe Saechao
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Old 09-10-2010, 06:52 PM   #2
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hope everything goes well with the fundraiser. my roommate has cf so i know how it can be. hope your daughter does well
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Old 09-10-2010, 06:59 PM   #3
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hope all goes well with the fundraiser,your daughter is in my prayers.
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Old 09-10-2010, 07:03 PM   #4
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Thanks guys.

I am sorry to hear about your room mate. She was born on July 8th and so far she has been in and out of the hospital like crazy. I can only imagine what your roomie has gone through.

I will be posting this in the Southern California Chapter also to try and get the word out.
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Old 09-12-2010, 01:28 PM   #5
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yeah it can be tough for him at times, but he says that the meds just keep getting better and better and he's stayed healthy and out of the hospital for about a year now. ill pray for your daughter to get healthy and stay out of the hospital
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Old 09-15-2010, 04:51 PM   #6
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Quote:
Originally Posted by jfisher View Post
yeah it can be tough for him at times, but he says that the meds just keep getting better and better and he's stayed healthy and out of the hospital for about a year now. ill pray for your daughter to get healthy and stay out of the hospital
That is good news Yeah I was reading online somewhere and it stated that with the new developments they are discovering and the new medications they are coming out with, people who are diagnose with cystic fibrosis are living a longer life than expected.
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Old 09-15-2010, 04:53 PM   #7
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Originally Posted by jfisher View Post
hope everything goes well with the fundraiser. my roommate has cf so i know how it can be. hope your daughter does well
How old is he? If you don't mind me asking.

OP,
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Old 10-10-2010, 08:49 PM   #8
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BUMP

19 more days!! Oh how sore I will be the day afterwards ; )
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Old 10-10-2010, 09:13 PM   #9
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My wife is a Nurse in a children's hospital. The floor she works on handles all of the Cystic Fibrosis patients.

I know from her that it can be a scary diagnosis. HOWEVER, there is also much hope and as previously stated, the recent advances have made huge improvements. Though it's a children's hospital, the one exception they have is for CF. They treat CF patients for life. They have many patients in their thirties (possibly even older). And to that, you need to remember that they were born 30 years ago, meaning the treatment they received was not that which your daughter will receive.

My hope and prayers are with you, your daughter, and your family in general.
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Old 10-15-2010, 12:50 PM   #10
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Quote:
Originally Posted by BGrutter View Post
My wife is a Nurse in a children's hospital. The floor she works on handles all of the Cystic Fibrosis patients.

I know from her that it can be a scary diagnosis. HOWEVER, there is also much hope and as previously stated, the recent advances have made huge improvements. Though it's a children's hospital, the one exception they have is for CF. They treat CF patients for life. They have many patients in their thirties (possibly even older). And to that, you need to remember that they were born 30 years ago, meaning the treatment they received was not that which your daughter will receive.

My hope and prayers are with you, your daughter, and your family in general.
Yeah I have read lots of online stories and there have been huge improvements. It is scary for young parents to have to deal wit abnormalities with their new born. Fundraisers are a good way to get the word out and show those new parents dealing wit any unfortunate cases that they are not alone.

Thank you for your prayers and blessings and tell your wife I said thank you for doing what she does ; )
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